ENDOMETRIOSIS EXPERIENCES

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WITHOUT THE AUTHOR'S PERMISSION

Pete Hueseman, R.Ph., P.D.-Compounding Specialist
My source for bioidentical hormones

Many thanks to the women who have shared their experiences so that others may
learn and understand the course of an insidious disease that to date there is
no cure for. Perhaps through increased awareness and research, cure can be
found and our daughters will not have to suffer as we have.

1. Did you have problems obtaining a diagnosis of Endometriosis?

*I have complained of my periods for years, especially in the last 5 years.
I finally stumbled across some information about endometriosis and
recognized the symptoms. I went in to my internist (He's the primary care
physician for me in my HMO) and told him I thought I had endometriosis. He
told me that no, I probably didn't, I was too old to have endometriosis.
(I'm 38). I told him that I felt like I needed to go to the emergency room
during my periods and he said he thought I might have a fibroid. He finally
referred me to a gynecologist. When I had a lap done I had endo, fibroids
and adhesions. There was also a fairly large endometrioma on my left ovary.
I'm glad I was persistent in wanting to see a gynecologist.

2. Do you have any family members with Endometriosis?
*Yes, my mother and my sister.

3. Were you every on Birth Control in your lifetime? If so for how long?
*I tried them 20 years ago for about one year. They made me depressed and I
gained weight.

4. Did you use tampons or pads during your period?
*Kotex tampons and pads at the same time.

5. What symptoms do you have associated with Endometriosis?
*Pain, irritable bowel syndrome, fatigue, anemia.

6. Are there any issues you are confused about regarding endometriosis?
*Yes. I've been to three gynecologists, an internist and an endocrinologist.
They all agree I should have a full hysterectomy with removal of both
ovaries, even though my right ovary is good. Much of the literature I read
says I should be able to keep a good ovary, but all the doctors are adamant
that I don't. I've put off having a hysterectomy for now.

7. Do you know about the Endometriosis Association? (It's a great source of
support and information!) The url is on my homepage.
*Yes. I have their latest book.

8. What treatments have you tried to alleviate or cure your endometriosis?
*I had a laparoscopy in March with laser treatment for the endometriosis.
I'm trying to eat right and exercise regularly, also have started taking
iron for my anemia. So far I'm feeling much better.
I tried natural progesterone cream but it gave me yeast infections. I've
also tried flax seed oil and soy products. They seem to help a little. I
take Advil or Aleve for pain. For now the OTC pain relievers are helping
and they didn't before the laparoscopy.

9. Any information I can help you with??
*Would like to hear from others with endometriosis, and would like to hear
more about whether to keep ovaries or not (I don't think anyone here will
let me).

*Endometriosis Questionaire

1. Did you have problems obtaining a diagnosis of Endometriosis?
*no problems I have actually had 5 laproscopic surgery's to check on it
though and keep up on the treatments.

2. Do you have any family members with Endometriosis?
*My mother had a hysterectomy due to fibroids after the hysterectomy they told
her that she also had endometriosis but she never knew till after the surgery

3.)Were you every on Birth Control in your lifetime?
If so for how long?
*Again I was on Norplant for birth control when they diagnosed the
endometriosis. They removed the norplant as soon as I was diagnosed.
They told me that it could make it worse.

4. Did you use tampons or pads during your period?
*Used pads during periods since the flow was too much for a tampon

5. What symptoms do you have associated with Endometriosis?
*Extreme pain with periods and sex. Fatigue from all the pain. Depression

6. Are there any issues you are confused about regarding endometriosis?
*I did a lot of research on endometriosis when I was first diagnosed with it.
It would be nice to actually know what causes it but I know that will probably
never happen

7. Do you know about the Endometriosis Association? (It's a great source of
support and information!) The URL is on my Resources Page.
*have heard of the endometriosis association but have never contacted them

8. What treatments have you tried to alleviate or cure your endometriosis?
*I have been on two courses of Lupron treatment. One for 6 months and one for 9
months. Both times the endometriosis went into remission but came back within
a few months Ended up with 4 children though so I know I was one of the luck
ones. Just had my hysterectomy on September 28th. Hopefully that will be the
end of my pain.

1.) Did you have problems obtaining a diagnosis of Endometriosis?
*Yes

2.) Do you have any family members with Endometriosis?
*No

3.) Were you every on Birth Control in your lifetime? If so for how long?
*Yes, for only a couple of years

4.) Did you use tampons or pads during your period?
*Tampons

5.)What symptoms do you have associated with Endometriosis?
*Constant pain, irregular periods

6.) Are there any issues you are confused about regarding endometriosis?
*No

7.) Do you know about the Endometriosis Association? (It's a great source of
support and information!) The url is on my resource page.
*No and will check it out when I finish

8.) What treatments have you tried to alleviate or cure your endometriosis?
*Surgery was the only treatment I received.

9.) Any information I can help you with??
*Not at this time

1.) Did you have problems obtaining a diagnosis of Endometriosis?
Yes. My only child was born September of 95. The previous May the pain
had started. I remember it well, because it was Memorial Day. The pain
was severe and in the kidney area in my back. I was hospitalized and
tested for kidney problems. After the baby was born I continued to have
the pain. My OB-GYN sent me to a urologist in April of 96. He did a
bladder scope and didn't find anything and didn't look further. I
continued to see the OB-GYN. The following April he sent me to another
urologist who made the suggestion of endometriosis. I had a follow-up
consultation with my OB-GYN who suggested going on Lupron. I tried it
for six months (the worst six months of my entire life) it took the pain
away. After the Lupron, I went on Provera. It wasn't long until the pain
started coming back.

2.) Do you have any family members with Endometriosis?
My mother had the symptoms of Endo, but was never diagnosed. I believe
she had it.

3.) Were you every on Birth Control in your lifetime? If so for how long?
No, as I had severe cramps, I thought it was normal and just went on
about my business. I thought it was fine, because my cramps were in no
way as severe as my mother described hers.

4.) Did you use tampons or pads during your period?
Pads

5.)What symptoms do you have associated with Endometriosis?
Severe cramps, low back pain, abdominal pain. All associated with my
period until I stopped having them with the Lupron and Provera. Now the
pain comes in no particular pattern. I also have pain during intercourse.

6.) Are there any issues you are confused about regarding endometriosis?
No

7.) Do you know about the Endometriosis Association? (It's a great
source of support and information!) The url is on my resource page.
Yes

8.) What treatments have you tried to alleviate or cure your endometriosis?
Depo-Lupron and Depo-Provera.

9.) Any information I can help you with??
I would like some more information on Depo-Lupron if possible. (If you
have it, please send to imheinz@aol.com)
Thank you

1.)Did you have problems obtaining a diagnosis of Endometriosis?
*sort of. my boyfriend knew right away from my description of pain. i was
in agony for 5 weeks before i could get treatment, since i had a new job
my insurance wasn't effective until 12/1, so i had to take medication
for pain until then. it started with ovarian pain, and progressed across
my uterus, and as if it wasn't enough, it began pulling on my S-1
nerves (they control the feeling in your legs). I had throbbing pain
down both legs and across my back, in addition to the abdominal pain. i
also bled heavily for 5 weeks. i saw 3 doctors, and had one tell me
(with the compassion of a Nazi soldier) that there was "nothing uterine
wrong with me...i had inflamed muscles and should see a physical
therapist." well, i was in the hospital 4 days later.

2.)Do you have any family members with Endometriosis?
*no

3.)Were you every on Birth Control in your lifetime? If so for how long?
*yes..since i was 17...I'm 26

4.)Did you use tampons or pads during your period?
*tampons

5.)What symptoms do you have associated with Endometriosis?
*see #1

6.)Are there any issues you are confused about regarding endometriosis?
*i never understood how it could come on so fast. i thought i was going
to die from the pain! it's usually a cyclical process, but mine didn't
quit...it came on with a vengeance.

7.)Do you know about the Endometriosis Association? (It's a great source of
support and information!) The url is on my homepage.
*no

8.)What treatments have you tried to alleviate or cure your endometriosis?
*i was schedule to go in for a laparoscopy to confirm diagnosis, but when
the doctor saw how bad it was, he stopped in the middle of the surgery,
called my boyfriend (the doctor), told him the situation, and they
decided that it would be best to do a pan-hysterectomy. Most women
wouldn't want their boyfriends to make such a call for them, but he was
acting in my best interest, and he knows i trust him with my life. (He
also knows that i had no plans for children in the future and witnessed
the pain and suffering that i endured for 5 weeks....5 weeks of
sleepless, crying nights). i was surprised, however, to wake up from
surgery and hear that they had done a hyster

9.)Any information I can help you with?

1.)Did you have problems obtaining a diagnosis of Endometriosis?
*I started severe cramping with my periods at age 14 ... I was diagnosed at
age 22 after a lap.

2.)Do you have any family members with Endometriosis?
*Most likely my mother and grandmother, but they were never diagnosed.

3.)Were you every on Birth Control in your lifetime? If so for how long?
*Yes, for 5 years ... it helped the bleeding and cramping.

4.)Did you use tampons or pads during your period?
*Both.

5.)What symptoms do you have associated with Endometriosis?
*cramping, diarrhea, bloating, back pain, etc.

6.)Are there any issues you are confused about regarding endometriosis?
*no ... I am scheduled for a hyst in 6 weeks.

7.)Do you know about the Endometriosis Association? (It's a great source of
support and information!) The url is on my homepage.
*No, but I will check it out.

8.)What treatments have you tried to alleviate or cure your endometriosis?
*Lap, 6 months of Danocrine, surgery to remove endo, birth control and now
just my friend Advil

9.)Any information I can help you with??
*I am scheduled for another lap and hyst the end of April. Anything I
should be aware of?

1.)Did you have problems obtaining a diagnosis of Endometriosis?
*Yes, I've had symptoms since I was about 17 yrs old, problems
became worse after having children, it took seven operations and
three Drs to finally diagnose the problem in my 30s. I have now
been diagnosed with adenomyosis and am having a hysterectomy in Sept.

2.)Do you have any family members with Endometriosis?
*No

3.)Were you every on Birth Control in your lifetime?
*Yes
If so for how long?
*off and on about 5 years

4.)Did you use tampons or pads during your period?
*tampons

5.)What symptoms do you have associated with Endometriosis?
*pain during most of the month, especially between periods, after
periods for about ten days, and during, pain during intercourse,
bowel problems, heavy periods with clotting, it seems to be
getting worse each month, less time between pain free days,
also bloated stomach, feels like I'm pregnant at times.

6.)Are there any issues you are confused about regarding endometriosis?
*Why is it so difficult to diagnose, and does the delay in
diagnosing cause more problems later on?

7.)Do you know about the Endometriosis Association? (It's a
great source of support and information!) The url is on my homepage. here but without much luck.

8.)What treatments have you tried to alleviate or cure your
endometriosis?
*Birth control pills which made the symptoms worse, and surgery,
also am on pain meds.

9.)Any information I can help you with??
*The website on hysterectomy has been a life saver. I have not had
any details of the surgery, recovery, or hrt from my Dr and feel I
have been left on my own to find out.

1.)Did you have problems obtaining a diagnosis of Endometriosis?
*Yes, I had a hard time conceiving the first time I tried. My doctor
said he thought I had "a touch" of endometriosis - although I never
had pain with periods.

2.)Do you have any family members with Endometriosis?
*My mother had painful periods so she may have had it.
My sister's do not.

3.)Were you every on Birth Control in your lifetime?
If so for how long?
*Yes, the pill for a total of 15 years.

4.)Did you use tampons or pads during your period? *Both

5.)What symptoms do you have associated with Endometriosis?
*None until after twins then I had adenomyosis, bleeding
polyp, infection, scar tissue and over sized uterus to deal with.
Miserable.

6.)Are there any issues you are confused about regarding
endometriosis? NO

7.)Do you know about the Endometriosis Association? (It's
a great source of support and information!) The url is on my homepage.

8.)What treatments have you tried to alleviate or cure
your endometriosis?
*Birth control pills and pregnancy then hysterectomy. They all work.

9.)Any information I can help you with??
*No thanks!

1.)Did you have problems obtaining a diagnosis of Endometriosis?
*I was diagnosed at the age of 16, I am now 34 and have to have a
hysterectomy done on Friday because of the damage done to everything
from the endometriosis. My Doctor performed diagnostic surgery when
I was 16 and I was diagnosed right away.

2.)Do you have any family members with Endometriosis?
*It is believed that my mother and my Grandmother both had it. My
mother went through similar experiences that I did. Her also
resulted in a hysterectomy.

3.)Were you every on Birth Control in your lifetime?
If so for how long?
*I was on and off it for 18 years.

4.)Did you use tampons or pads during your period?
*Pads

5.)What symptoms do you have associated with Endometriosis?
*Heavy bleeding, severe cramping, irregular periods, passing out
from my blood pressure dropping so low from loss of blood.

6.)Are there any issues you are confused about regarding endometriosis?
*No, my Doctor has kept me well informed

7.)Do you know about the Endometriosis Association? (It's a great
source of support and information!) The url is on my homepage.

8.)What treatments have you tried to alleviate or cure your endometriosis?
*I have had 8 diagnostic surgeries to clean out the endometriosis. I
also had the procedure done where the inflate a "balloon" in your uterus
and burn the lining. Nothing has work for any long period of time. I've
also tried the Lupron shots

9.)Any information I can help you with??
*I am now at the end of my rope and am forced to have a hysterectomy
to save my life. I've gone to specialist and other doctors and they
all agree that this is best and safest for me.

1.)I have been told I have everything from bad scar
tissue resulting from childbirth, PID's, tubal pregnancy,
and ovarian cysts. It took about a year before I was
diagnosed, and that was only because I asked a dr. to
perform a laproscopic operation; I was told this was the
only way to diagnose endo.

2.)No, I am the only one--lucky me!:)

3.I went on birth control when I was 19 and have been on
it ever since(I'm 27 yrs old). Of course, I have had
breaks when I was pregnant w/both children, and have been
off b.c. for 6mos while I was on Depo-Lupron injections
to treat the endo. I just started my first pack 3wks ago.

4.)I switch off/on during the week of period & use both.

5.)My symptoms include 'menstrual' cramps, extreme lower
back & leg pain, diarrhea, bleeding/spotting, headaches,
and have been very moody!

6.)I've been reading up and checking the internet for
any info. I can get my hands on regarding this horrible
disease. It's still confusing and frustrating, but I
understand what it's doing to my body, mind, and life in
general. I feel like I should be a pro. on this subject!

7.)Yes, I've visited their web site numerous times and
get newsletters as well.

8.)I've tried birth control--pills and IUD-- and just
recently completed a 6-mo. Depo-Lupron injection treatment
recommended by the surgeon who did my lap., and I take A
LOT of pain killers.

9.)Like I said before, I have made my mind up to have a
hysterectomy. I've been avoiding it for awhile for various
reasons--my age, my husband(who doesn't agree w/my
decision), and the fact that I associate this w/menopause
and women my mother's age! It's not fair that I even have
to consider it!. On the pro side, we don't want anymore
children and my ovaries were in good shape(as of May) so
I would be able to keep them. At this point, it is my
understanding that it won't be as traumatic hormone-wise
if I get to keep them...

1.) Did you have problems obtaining a diagnosis of Endometriosis?
*Yes, it took many years of agony and pain before finally
being diagnosed.

2.)Do you have any family members with Endometriosis?
*I was adopted but found birth family. My mother had
already passed away but had had a hysterectomy for
some reason.

3.)Were you every on Birth Control in your lifetime?
If so for how long?
*A total of about 2 years altogether.

4.)Did you use tampons or pads during your period?
*Usually tampons until the pain became intolerable,
then I had to use pads just to be more comfortable.

5.)What symptoms do you have associated with Endometriosis?
*Severe pain with cycles (which are very irregular),
tolerable pain without cycle. Pain with intercourse, IBS,
bloatiness, fatigue, moodiness, depression-you name it.
I was also diagnosed with cervical cancer.

6.)Are there any issues you are confused about regarding
endometriosis?
*Two weeks ago was the first I had ever heard about it
and the Dr. thinks it's bad enough to do a complete
hysterectomy, I'm 37 but done having kids. I wonder
why I had never heard about it until just recently,
are Dr.'s unaware of how common it is? Do they think
women who present with the symptoms I did are just
big babies about pain? I had to go through five
different Dr.'s before any took me seriously.

7.)Do you know about the Endometriosis Association?
(It's a great source of support and information!)

*No, but will check it out.

8.)What treatments have you tried to alleviate or cure
your endometriosis?
*Before it was actually diagnosed one Dr. had me go
on birth control to try and regulate and possibly subside
symptoms, I could only take them for two months she
said because of my age (36 at the time) and because I
smoke. Then I was put on different types of pain
medications until I had a pap and it came up positive
for cervical cancer. I went from thinking maybe I was
going crazy to being scheduled for a hysterectomy next
week without ever really knowing what was going on.

9.)Any information I can help you with?
*Say a prayer for me?!

You certainly are in my prayers friend!

1.)Did you have problems obtaining a diagnosis of
Endometriosis?
*No, I did not even know that I had endometriosis until a
laproscopy was done to determine the size of the
fibroid tumor.

2.)Do you have any family members with Endometriosis?
*Not to my knowledge. I have friends that have been
diagnosed with it and who are unable to conceive.

3.)Were you every on Birth Control in your lifetime? If so
for how long?
*Yes, the birth control pill, for approximately one year,
when I was 18.

4.)Did you use tampons or pads during your period?
*Answered above

5.)What symptoms do you have associated with Endometriosis?
*I didn't know I had this until I was told.

6.)Are there any issues you are confused about regarding
endometriosis?
*No

7.)Do you know about the Endometriosis Association? (It's
a great source of support and information!) The url is on
my website.
*No, I didn't know about the association; however, as I
have just had a hysterectomy, I don't feel that it now
pertains to me.

8.)What treatments have you tried to alleviate or cure
your endometriosis?
*A total hysterectomy - see questionnaire above for
explanation.

9.)Any information I can help you with??
*At this time, I have no questions, but, I would appreciate
receiving information regarding this surgery.

1.)Problems obtaining diagnosis?
When I switched from an OB/GYN who kept on
saying "when you have children, your problems will
go away" diagnosis occurred through laparascopy.

2.)Family members with Endo?
My mother had problems with her period since age
15. In 1941 they didn't have a clue.

3.)Birth Control usage?
Birth control pills for 10 years from age 21-31.

4.)Tampons or Pads?
Both, mostly tampons unless the flow was too
heavy, then both at the same time.

5.)Endo related symptoms?
Severe pain with period and major bloating. Pain
not controlled by anything legal. Some relief of
sorts with double doses of codeine and a martini
so I could get to sleep.

6.)Confused about Endo?
No

7.)Knowledge of Endometriosis Association?
Yes

8.)Treatments for Endo?
Had a second laparascopy after diagnosis followed
by Lupron for 6 months. Did not work. Pain came
back as before. Having less stress in life helped
as well to a degree. Pain was worse when I was
married! When I got divorced, I actually felt
better for awhile. Taking diuretics did not help
bloating.

9.)Information needed?
No -- I hope my recent hysterectomy has also
alleviated this problem -- it should.

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Hysterectomy & Endometriosis Questionnaire

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1999 Jeannah McElroy. Copyright

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